Tag Archives: autism

I have vague memories from the late 1960s of a classmate in elementary school. His name was Johnny. We all liked Johnny, he was just different from the rest of us. He talked funny. He was kinda clumsy. And he didn’t do real well in school. On the playground, he would pretend he was a race car. Not a race car driver, but the actual car. He would run around and around in circles. I never really remember him playing baseball or football with us. He always just off to the side. An island to himself.

I reflected on this childhood memory on Sunday, November 18th, the day we completed the four week pilot program for Islands of Brilliance. To the inevitable question of “How did it go?,” my response would be:

It was good.

Not great, not amazing, not awesome, not wonderful, not wildly successful? Just good??“Good“ as in the choice between average and excellent in an online rating? Surely there is a more hyperbolic word I could use.

No. It was good.

Good in the very deep meaning of that word. Good in the human of it. Good in something that is indescribable and big, that you can’t possibly wrap your head around immediately. The good that you feel in quiet. Good as it is rarely found nowadays.

If you are unfamiliar with our Islands of Brilliance pilot program, you can read more about the story behind it and how it came to be here, here, and here. Here is a description of the program in a nutshell:

Islands of Brilliance is a learning workshop developed for children with Autism Spectrum Disorder (ASD). Curriculum is individualized to foster each student’s creativity through the use of software & technology.

Each student is matched with their own creative mentor—a professional in the design field—who shows them how to use software programs like Photoshop and Illustrator to create pictures and stories about their favorite subjects.

Paraprofessionals are an important part of every class—to provide assistance and help smooth out any bumps in the road students might have.

Through a partnership with Discovery World, we were able to utilize their digital print lab to pilot the program without having the costs of equipment, software and space. (Our experience in the lean startup process and our background in UX helped guide our thinking in terms of prototyping the project). The wonderful connections of our good friend Erica Conway provided us with more volunteer creative mentors than we could have hoped for. We kept the pilot group to seven students, which we felt was manageable and that would allow us to stay focused on what we needed to learn and improve on.

The week prior to the program starting, we met with our seven creative mentors to go over curriculum and talk about the unknown challenges we would face. I told them, “we are really entering uncharted waters here.” For me personally, there was both excitement and anxiety leading up to the first class. I saw this as a positive, because certainty is either a sign of over-confidence, or an indication that you’re executing the tried and true. We had an untested hypothesis on something that hadn’t been done before. We had written user stories to think through the workshop experience, thought and planned out the curriculum, but we knew once student and mentor got to working together, the real learning would begin—for us.

This is how it went.

The first day of classTo look back and think that students and mentors were total strangers is odd to me now. In my mind, I now see them as teams, even friends. Based on the background information we provided the mentors the previous week, each team got right to work on their project together. It was my role to circulate through the room, listening, documenting, and helping out wherever necessary.

Sketching and collaboration

Basically, I was a witness.

I am still at a loss for words for how to describe this. As students and mentors inhabited our conceptual framework, magic began to happen. When an idea begins to live and breathe, when the idiosyncratic and the unexpected happen, when the wonderful creativity of children takes over, it’s breathtaking. In the first 90 minutes, students and mentors showed that this idea was much bigger in their hands then it was in our heads. We had thought we would be teaching our students some fun, useful software skills. Instead what happened was a team of two sharing, collaborating, sketching, and storytelling. Real bonds were being created.

After class, we all debriefed as a group—staff, mentors, and paraprofessionals. We went over the needs of each student. What worked, what didn’t, what could we do to make each team more successful. We worked together as a group to develop strategies for the next class for each student to ensure the best experience. This was the most committed, collaborative team I’ve ever been a part of.

LearningThere is a moment you know you have hit on something. That moment came about 10 minutes before the scheduled start of our second class. Five of our students had already arrived, immediately sat down next to their mentors, and went right to work. If you have not worked or known children with ASD, it is hard to describe the emotion in this moment. Children with ASD struggle with connection. And there right before our eyes, they proved that an immediate connection had been made with their mentor and the work that they were doing. Children with ASD struggle with social interaction and often have a lack of interest in many of the programs that are created for them. In this moment, we found that we had succeeded in addressing both.

10 minutes before the “start” of class

Through the course of the program we learned that flexibility, resourcefulness, and patience were key. Each student had strengths, and each student had limits. Having a team that could respond and improvise in any given a situation (I call this quality IFTTW) is a key. I liken our traditional educational process to our interstate system—built to serve a large number of travelers in the most efficient way at the fastest speed possible. Children with ASD don’t fare well in this “interstate” system. Their educational journey may involve taking backroads, hiking trails, and paddling up rivers. In time, they may reach the same destination, it just takes a different route, and it may take a bit longer. But there is unexpected, often breathtaking beauty on this unplanned path.

Week four came so fast. The final class of the pilot project was bittersweet. All of our students completed and printed their projects—an 18″x24″ poster. They shared them with their classmates, mentors and parents. Their was so much pride in what they had each accomplished. We had come to know and love each and every one of our students, but now this chapter was ending. The feeling of good that day is difficult for me to describe.

Success

This is the most important project I have worked on in my life. To have completed it, and to have parents rave about the experience we created for their children is nothing short of humbling. Our plans are to take our learnings and feedback and scale the program so that we make the program available to more children and families in 2013.

As a member of the creative class, I think I can say that we are too preoccupied with ownership. It was my idea. It was her idea. They came up with the big idea. So much ownership assigned to something that is barely tangible, a whisper in your head. Islands of Brilliance was my experience of what happens when you step aside, and let others inhabit an idea. Over the course of four weeks, the idea gradually owned us. I think that’s when an idea becomes a belief.

It has been a long journey to get to the point of being able to write this. This project, depending on how you look at it is either four years in the making—when the dots connected for the idea—or 12 years in the making, when my son Harry was diagnosed with ASD. To get here, having experienced all the highs and lows as a parent, and then the fits and starts of how to get this project off the ground is quite a story. These are the people who I am ever grateful to for coauthoring the story.

Matt Juzenas, Erin Doty, Blake Himsl Hunter, Gina Ferrise, Patrick Blend, Tia Richardson, and Nate Fehlauer, our incredible mentors. Words fall short for what I feel about what they’ve accomplished. They are brave explorers, every one of them.

Meara Young, Ashlea McKlinsky, Ally Fergoso, Ayesha Teague all volunteered as paraprofessionals. Their insights and support were invaluable.

Cindi Thomas and Kirsten Corbell took me seriously when I said that I thought Translator had a greater part to play in the world, that we could do social good, that we could make a impact in education. Islands was a project that would make our first mark doing that. Kirsten personally took charge of the program management, because of her interest in progressive education. Cindi has always championed exploring the limits of who we are and what we can do. I think she’s a bit proud of this project.

Finally, my wife Margaret played the critical role of what I call the “headmaster” (headmistress??) of the program. Her skills as a special education teacher—love, enthusiasm, and patience—were key to making the program successful. It was incredible to be able to work together on this.

I write this post on the one year anniversary of getting two minutes to stand up in front of the attendees at Seth Godin’s Medicine Ball Sessions and describe my vision of wanting to launch a creative camp for children with autism. Six people volunteered to brainstorm with me that night to help get it closer to becoming a reality. I do believe that experience unlocked unseen tumblers in the universe that led to Islands of Brilliance launching this year. It also comes the day after the announcement of The Icarus Sessions, organized by Seth Godin. The assignment for participants is—in 140 seconds or less—tell the story about something you’ve made. What have you created? What frightened you? What matters?

My story goes something like this: I was part of a fearless group of people, we set off into uncharted waters, and we found our own little island.